This video is a powerful description of sudden onset ME/CFS. (Those who had acute onsets will find it achingly familiar.) Unlike most other videos on this subject, it does not rely on speech to get the point across.

Often images and music can do a better job of portraying reality than interviews. The emotive content of abstract representation seems to bypass the skepticism that is aroused in people, particularly physicians, when they hear people speak. Music hits us in a place that has no defenses.

If I could, I would show this video to every physician and medical student - everywhere.

On April 24th, after 22 years of serving as the head of the CFIDS Association of America, Kim McCleary announced her resignation for family reasons. In a touching and, at times, tearful video statement (see below), McCleary stated that her term would be ending in June. McCleary will stay on as an active member of the Association’s Scientific Advisory Board.

McCleary’s term as president and CEO of the CFIDS Association of America began in 1991. During her tenure, McCleary shifted the focus of the organization toward research, policy, and education issues. Her goal was to obtain recognition for ME/CFS as a disabling condition, and to influence policy at the national level.

Under her leadership, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition. She fought to create and sustain a dedicated federal advisory committee to the Secretary of Health and Human Services on ME/CFS research and education, and helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research. McCleary led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and delivered testimony at numerous federal hearings and meetings.

McCleary’s strong personal attachment to the ME/CFS community was evident during her resignation speech, during which she listed the accomplishments of the Association, and expressed her commitment to create a world without ME/CFS. In a voice choked with emotion, she lauded the struggles of “family members, parents, spouses, brothers, sisters, sons, daughters who resolve to battle for their loved ones, and all people affected by ME/CFS.” Through tears, McCleary said, “I look forward to watching progress in the days ahead and to celebrating with you when effective treatments and cures return every person living with ME/CFS to lives they dream of living again.” We look forward to that day as well, and, when it comes, we hope to celebrate it with Kim McCleary.

Transcript

“Hi, I’m Kim McCleary president and CEO of the CFIDS Association of America. In 1991 I joined the CFIDS Association and this community as the organization’s first chief staff executive. When I came to this organization, I could not have envisioned all the ways in which my work would become my life and how the people I would meet would shape and redefine me. I’ve been honored to partner with thousands of volunteers, nearly a hundred board members, fifty staff members, seven chairmen, and founder, Mark Iverson, to advance our mission. I will always be a vocal champion for this organization and its vision of a world without ME/CFS. Over the past 22 years I have been part of some incredible work, the drug development and patient focus workshop that FDA will host later this week, launching the world’s first patient-centered virtual institute for ME/CFS, the Research Institute Without Walls, and dozens of events, live and over the web that gave voice to thousands of people with ME/CFS.I’ve come to know some of these amazing people personally. People who face this uncertain, chronic, debilitating condition with a brand of courage and optimism I don’t think I could muster or sustain: family members, parents, spouses, brothers, sisters, sons, daughters, who resolve to battle for their loved ones, and all people affected by ME/CFS. Each and every person I’ve met through the vital work of this organization has touched my life in ways I’ll carry with me lifelong. Along with my family I will be relocating in June, and it is time to write a new chapter. The vision is clear. The path is laid out before us. Over the past several months the leadership team has worked together to develop an incredibly strong strategic plan that is already changing the landscape for ME/CFS research to accelerate the path for safe and effective treatments. There is an amazing team in place that will execute that plan and make it reality for you. I pledge my continued dedication through the end of my term in June, and then I will proudly serve as an active member of the Association’s Scientific Advisory Board, so that our work together will not end.My personal connection to this community will endure and leave a lasting impression on my life. I humbly thank you for the years you have entrusted me to steward this fine organization. I look forward to watching progress in the days ahead and to celebrating with you when effective treatments and cures return every person living with ME/CFS to lives they dream of living again."

Mindy Kitei is a science reporter who has been covering CFS/ME for more than 20 years. Her commitment to people with CFS/ME has been unflagging, and her barbed criticism of the CDC's mishandling of the CFS/ME epidemic has been continual over the course of her career. On May 12, 2011, she delivered this fiery public comment at the CFS Advisory Committee (CFSAC) meeting.

" To the CDC and NIH scientists who have been ... sweeping a world-wide human catastrophe of 17 million people under the carpet, I say to you, 'Have you no sense of decency?'"

My name is Mindy Kitei. I’m a science reporter who’s covered ME/CFS for twenty years. Last June, I began my blog, CFS Central, in honor of my friend Nancy Kaiser.

I met Nancy in 1994, while working on an investigative piece for Philadelphia magazine called “The AIDS Drug No One Can Have” about the experimental HIV and ME drug, Ampligen.

Nancy had a severe case of ME. She had multiple seizures every day. When she tried to sit or stand, her blood pressure plummeted; she often crawled instead. She tried many experimental treatments to get well.

Nancy died on June 15, 2008. I naively thought she’d never succumb to the illness, as if by sheer will she’d keep herself alive.

Three other ME patients whom I interviewed in 1994 have also died of the disease.

Despite its gravity, despite ample evidence that ME is an infectious disease, the government treats it like a joke. The CDC and parts of the NIH have been playing a shell game: studying patients with simple fatigue or chronic fatigue or depression—but labeling them CFS patients.

Even when the CDC conducted its XMRV study, it studied the wrong cohort and refused to do an actual replication of the Science study. It’s just a different kind of shell game from the bogus psychological CFS studies that are the agency’s trademark.

To the CDC and NIH scientists who’ve been doing this ludicrous research for three decades and sweeping a worldwide human catastrophe of 17 million people under the carpet, I say to you: Have you no sense of decency at long last?

ME patients are suffering from a serious infection— most likely a retrovirus—but are told by charlatans to exercise and have a positive attitude.

Researchers in government and at universities, as well as the CFIDS Association, admonish desperate patients that taking anti-retroviral drugs is medically indefensible. When the healthy reprove the sick that they’re impatient and reckless and foolish and need to wait for treatment, I say there is no treatment, and where are the drug trials? Thirty years and not one approved drug and none in the offing.

ME patients should have the same freedom to try medications that AIDS patients had in the early days. The AIDS patients became their own advocates because there was no one advocating for them. The same holds true for ME patients now. Patients are gravely ill, and they have the right to treatment. To say that they don’t--that’s what is medically indefensible.

The U.S. government conducted the Tuskegee Syphilis Experiment from 1932 to 1972. The study tracked the progression of untreated syphilis among poor African American men but didn’t tell them they had syphilis. The men got sicker and many died. In 1997, President Clinton apologized to the remaining Tuskegee men. Clinton said: “What was done cannot be undone. But we can end the silence. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.” The United States government has watched ME patients suffer and die for 30 years, and has done nothing, and that is shameful.

In less than a year, more than 125 thousand patients from 108 countries and territories have found my blog, CFS Central. Patients write to me asking for help every day. Toward that end, I request a meeting with Kathleen Sebelius, Howard Koh, Francis Collins, Tony Fauci and Thomas Frieden to discuss how to turn this situation around, by funding good studies and finding effective medications.

About funding ME, Dr. Dennis Mangan said during this meeting: “We’ll use one dollar and try to make two.” I’m sure Dr. Mangan means well, but it isn’t enough. As AIDS activist Larry Kramer said years ago about HIV patients: “We are not crumbs.” After thirty years of neglect, ME needs research parity with HIV. We also need a czar who will oversee ME and report directly to President Obama.

Finally, we need to enact the ME/CFS Care Act. Much like the Ryan White Care Act for HIV patients, the ME/CFS Care Act will provide health coverage to needy patients.

In closing, I ask you, Dr. Wanda Jones, to ensure that this meeting occurs. Dr. Jones, will you help me?

The study referred to in this news report was published in 2011. (See below for a link.) The researchers compared cerebrospinal fluid from 10 healthy controls with the fluid from people with CFS (using the Fukuda case definition) and with Neurologic Post Treatment Lyme disease syndrome (nPTLS), two conditions that share common symptoms of fatigue and cognitive dysfunction. The rationale for the study was that "despite extensive research, CFS and nPTLS remain medically unexplained. There are no biological markers to distinguish these syndromes, creating diagnostic dilemmas and impeding research into understanding each individual syndrome."

After examining the cerebrospinal fluid samples, the research team discovered distinct sets of proteins which could accurately distinguish between the two illnesses and differentiated them from healthy controls. The study identified 738 proteins that were found in CFS, but not in either healthy normal controls or nPTLS; 2) 1,582 proteins that were not identified in CFS, but were in either nPTLS disease or healthy normal controls; 3) 692 proteins that were identified in the nPTLS patients, but not in healthy normal controls or CFS; and 4) 1,597 proteins that were not identified in nPTLS, but were identified in either healthy normal controls or CFS. (Of further interest the researchers noted that the CDK5 pathway, was "significantly enriched" for proteins found exclusively in the CFS fluid. The researchers pointed out that this signaling pathway has been linked to Parkinson's and Alzheimer's, two neurological diseases.)

The significance of this study is that the analysis of proteins in cerebrospinal fluid could serve as a biomarker for CFS.

This is a short video of Dr. Jose Montoya of the Stanford Hospital Infectious Disease Clinic, speaking about CFS/ME. Dr. Montoya has completed clinical trials of valganciclovir (Valcyte), an antiviral, on patients with Viral Induced CNS Dysfunction, a subset of patients with Chronic Fatigue Syndrome. The data Dr. Montoya presented at the 2008 International Conference on HHV-6&7 indicated that after taking Valcyte, patients experienced significant cognitive improvement. He is currently collaborating with Ian Lipkin, Professor of Neurology and Pathology at the College of Physicians and Surgeons at Columbia University. Professor Lipkin is also Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases. In this interview, Dr. Montoya addresses the onset and treatment of CFS/ME. He states that perhaps 11% of those who have acute infections of any kind may develop CFS/ME. Dr. Montoya believes that CFS/ME is an immune response to an infection. While the initiating infection may vary from patient to patient, he believes that CFS/ME is most likely caused by some common pathway in the immune system, which he characterizes as a “two-edged sword.” On the one hand, the immune system combats the infection, but on the other it may perpetuate an ongoing cycle of symptoms.

Dr. Montoya's primary clinical approach is through the use of antivirals. He has personally seen patients who have been ill for decades make recoveries after antiviral treatment. His main interest is in “brain fog,” the set of cognitive disturbances that inhibits a patient's ability to focus or to perform mental tasks.

Dr. Montoya's goal is to have a CFS/ME center where patients can recover, away from the stresses of life. “Our dream is to eradicate CFS from the surface of the earth,” he states. He believes that dream is within our reach. More information: Stanford Chronic Fatigue Initiative http://chronicfatigue.stanford.edu/

Dr. Byron Hyde and Dr. Kenny De Meirleir are two of the best-known names in the field of researching CFS/ME. Dr. Hyde is the director of the Nightingale Research Foundation located in Ottawa, Canada. His book, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome remains the most comprehensive collection of scientific and clinical studies on CFS/ME ever published.

Dr. Kenny De Meirleir is a professor of physiology and internal medicine at the Vrije Universiteit Brussel in Belgium. Dr. De Meirleir has co-authored more than 80 studies on CFS/ME. He was also one of the authors of the International Consensus Criteria, the most accurate case definition for evaluating CFS/ME. Dr. De Meirleir's work is based on the premise that the gut wall in CFS/ME is abnormal, and that bacterial pathogens in the gut must be treated in order for antivirals or other treatments to be effective.

In this interview, conducted in 2008 by Öppna Kanalen Göteborgs Webb-TV (a Swedish open-channel station), Byron Hyde spoke about CNS involvement. His perspective is that CFS/ME is a form of brain injury. He considers it to be a diffuse injury that results in an inability to handle physical or mental stress. Once the brain is injured, the illness affects all body systems. He does not believe there is a general treatment for CFS/ME. However, he believes there is a great deal of collateral damage that must be treated on an individual basis.

Dr. Kenny De Meirleir spoke about his approach to treating CFS/ME. He performs normal tests to exclude major diseases, then does a series of tests for viruses, immune system and digestive system function. He believes that there is a predisposition to the disease when there is food intolerance or maldigestion. He considers maldigestion to be a major stress on the immune system, 80% of which is in the gut. When another infection occurs, “your bucket flows over and you go into a state where the immune system never comes to rest.”

In CFS/ME, Dr. De Meirleir treats food intolerance first (with diet). Then he treats gut dysbiosis (abnormal gut flora) and helps repair the gut barrier (leaky gut). He says it takes a year to recover gut function. Dr. De MeirLeir also spoke at length about subgroups. While this interview was somewhat shortened, there is a wealth of information here about the possible causes, mechanisms, and treatments for CFS/ME. Highly recommended.

Author

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.